People who equate truth with fact are missing the point.

Legacy

Several months ago, my family moved my grandma from her apartment in a retirement community to a shelter care facility where she has 24 hour help. The move was hard on her; she’s an extremely private person and although she has her own room, there are 10 other residents in the house.

She’s also not a person who trusts easily and as she has aged, her feelings about people outside of her own family have begun to border on paranoia. Fearful of losing her most precious possessions, she asked me to take care of her huge collection of family memorabilia – photos, newspaper clippings, funeral programs and guest books, letters, genealogies, and miscellaneous other items collected across her 88 years of life.

When I brought the boxes home, I gave them a cursory look, but didn’t have time to devote to a thorough investigation. Now that my kids are back in school, I’ve immersed myself in my family’s history. To say that I’m enjoying myself would be a serious understatement.

That side of my family were all farmers in the midwest. Their birthplaces are Illinois, Iowa, South Dakota, and Kansas. They were, universally, poor. They lived near small towns and were fiercely faithful people who walked to town every Sunday for services. None of the communities my family lived in were less than a full day’s travel from the nearest large city before the 1940s.

Those isolated women, my female ancestors, would understand so much of how I feel, I think. When the Spanish flu decimated my family in 1918, there was little they could do for their beloved children beyond trying to keep their fevers under control with wet towels. When their children were struck down by polio, mumps, “wasting disease,” or any other illness, they lived or died by the vagaries of nature, not medicine.

They just dealt with it. There were country doctors, of course, but before antibiotics, immunizations, and the thousands of other medical innovations of the early 20th century, there was little they could do for most illnesses.

I live in that world. There isn’t much medicine can do for pediatric mental illness, but worse, there isn’t much that medicine wants to do for pediatric mental illness. Carter is eight years old and his primary diagnosis is bipolar with psychotic features. Right now, he’s the most stable he’s been in over two years, and while I’m grateful down to my toes for that, I’m also furious that it took us this long.

It didn’t have to take this long. Certainly, mental illness is not like strep throat; we can’t throw a standard series of medications at it and assume that it will be fine. However, in spite of the fact that finding the right treatment takes time in even ideal circumstances, there’s no way it needed to take two years.

In the past two years, we have waited. We waited for our first appointment with a pediatric psychiatrist and we waited for a psychologist. After Carter’s intern psychologist graduated, we waited for a staff psychologist. We waited for a behavioral management specialist, and we’re still waiting for occupational therapy.

Worse than the waiting lists are the services that we desperately need but that don’t even exist. In the summer of 2009, Carter was acutely ill and in urgent need of a specialized environment during the day while I worked. He needed a day treatment program, but such a program does not exist here in Albuquerque. Carter was not safe for a regular child care environment and we had no options except for me to leave my job.

And so we sacrifice. We make do. We deal. We manage on our own, with severely limited resources and far, far too few options. We just get by.

When it became obvious to us several years ago that Carter was seriously ill, I could not imagine the vast injustices that exist in the educational and health care systems. I banged up against them constantly, refusing to believe that our (very expensive) insurance company and the US health care system would let such huge gaps in care go unchallenged.

I will continue to advocate for better (much much MUCH better) care for Carter and for all people living with mental illness, but in the meantime, there is some measure of comfort in thinking of the women who came before me, doing the best they could. They were resourceful and tough, creative and caring. They grieved their losses and kept living.

Those are the women I come from, bad asses all. Carter needs the same kind of mother; I hope I am growing into that legacy.

This post originally appeared at Hopeful Parents.

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7 comments to Legacy

  • It always makes you wonder – what will you leave behind from this life you live? Who will care and sort through your things? What will they find?

    http://www.pampersandpinot.com

    • Having all of these papers and photos has made me MUCH more mindful about that. Things that seem like silly scraps today will be treasures in 60 or 100 years!

      Of course, there is much that is different. In the 18th, 19th, and into the 20th centuries, photographs were expensive and there are very few, but still, I want to leave behind enough that people will have a sense of who I was. It’s terribly sad to me that some of my ancestors are just GONE, including their names.

  • I commented over there on HP, but also wanted to here as well, just to say hello.

    Just to say that I know how much those photos, those connections are meaning to you.

    I am right now, myself, in the middle of a scan-a-thon of photos from my late father’s legacy, both family photos and his important photography work, although sometimes these actually overlap. It brings up so many feelings. So yeah, I’m down the rabbit hole with you, too.
    Varda (SquashedMom) recently posted..Hopping on the Special Needs Blog Hop

    • Based on the photos in your sidebar, I knew you would understand!

      I feel so incredibly (massively, amazingly) blessed to have so many images and words. I know that many people have nothing, or very little. Of course, lots of people aren’t ever bitten by this bug. My husband agreed to get me what I need to create a family history of his side for Carter, but it just doesn’t capture his imagination the way it does mine.

  • What an incredible gift you were given despite the sad circumstance. Enjoy every moment of discovery as you immerse yourself in family history and build this treasure not just for Carter, but for yourself as well.

  • I tend to be obsessed with my family’s past. Mostly because I don’t have a clear story of it on either side. There are genealogies. There are very VERY few photos. and nobody tells too many stories. i create stories in my mind of what things were like.

    I loved your post, by the way. I can’t imagine in any way what it must be like to not have anything out there that will “fix” your child’s ailment. I thought about Carter, actually, this past week when E was getting his flu shot. I thought, “just like that my son won’t get the flu. how is there not a shot for other things? why are some thing so easily “cured” and other things not?”

    And then while I held my sobbing son (apparently shots hurt), I thought of how lucky I am.

    and how much I love and respect the moms who can’t just get a shot and make everything fine for their child.
    Katie recently posted..Getting Pooped On

  • I love old family memorabilia – there’s something so tangible about holding the past in your hand.

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